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One and one always equals two, at least that’s how most people see it. Sometimes simple, concrete facts are comforting, especially for people diagnosed with progressive diseases, where we can’t trust our own abilities day-to-day. But I believe my ability to thrive depends on being able to see the world…

I recently heard an interview with a local high school principal about the message he is sharing with his staff and students during these unprecedentedly hard times of COVID-19. In response to the pandemic, he said we can either “rise and whine or rise and shine.” How profound and…

“You need to go easier on yourself,” my friend told me. I was busy berating myself for having a bad week when my symptoms of Friedreich’s ataxia (FA) seemed to spike all at once. I did stop blaming myself, as my friend suggested. Instead, I thought…

I was diagnosed with Friedreich’s ataxia (FA) in 2007 after searching for answers to the consistent and heavy fatigue I was experiencing. In case you aren’t familiar with FA, fatigue is commonplace, but there are more urgent issues, such as cardiomyopathy and mobility…

The most unexpectedly disruptive symptom of my Friedreich’s ataxia (FA) has been fatigue. When I was diagnosed with FA in 2013, my initial research focused on the big symptoms, such as loss of balance and coordination, heart failure, loss of speech, and severe scoliosis. I read the word “fatigue”…

Living with a rare disease isn’t as simple as I thought it would be. I’ve been thinking about this lately, because on Feb. 28, the world will celebrate Rare Disease Day, a day for spreading awareness about those living with rare diagnoses, who often have disabilities.

Hello, I am so glad you are here! Take off your shoes, prop up your feet, and take a deep breath. You are welcome just as you are. Some days are permanently etched into our minds. One that will always stand out to me is Jan. 22, 2018. Then 16…

Now and then, I will have a “quiet spell” with my Friedreich’s ataxia (FA). I will notice that I haven’t fallen in a while. I haven’t noticed any new problematic symptoms develop. I will be relatively pain-free and somewhat energized. I will have some days, weeks, or even a month…

Since being diagnosed with Friedreich’s ataxia (FA) in 2007, the words “rare disease” have been commonplace in my vocabulary. Like many things, we often don’t pay attention to something until it specifically matters to us. I hadn’t given much thought about the topic of…

I admit I didn’t fully grasp the meaning of the African proverb “It takes a village to raise a child” until I became a mother. I bring it up because recently I saw a meme that said, “So, these villages that it takes to raise babies … do you…

Because I’m involved in the disability community on social media, I’ve learned a lot about language and other disabled people’s preferences. Common topics of discussion include both ableism and internalized ableism. Both of these “-isms” are extremely important to address within the disability…

The word “pity” has a pretty negative connotation. I don’t know many people who seek pity or want to be pitiable. I certainly don’t aim to make people feel sorrow for my misfortunes. Yet, as I’ve become increasingly disabled by Friedreich’s ataxia (FA) since publicly announcing my diagnosis seven years…